Everyone’s Got An Opinion About Autism

I’ve been wondering whether I actually did the right thing by getting a diagnosis. It hasn’t really achieved anything, but I now it feels like I have this permanent stain on my record – a label which ensures that I will be forever judged and deemed defective.

When I got my formal diagnosis, my plan was to tell everyone and celebrate my differences, but somehow that never happened. I told my family and a few trusted friends, but somehow I could never find the right words for the rest.

Unfortunately, everyone seems to have an opinion about autism, regardless of whether they actually know anything about it or not.

The stereotypes and misinformation surrounding autism are all-pervasive. When I’m bored, I read the news my phone and keep up with current news articles regarding autism, among other things. It’s quite rare to find one which doesn’t make me cringe, either at its use of inappropriate language or because they have made at least one major factual error.

Even if someone wanted to learn about autism, it would still be reasonable difficult for them to do so if articles like these were their only sources.

My mother phoned the other day, she told me an anecdote regarding my first year at school. The teacher told her that she had shown all the children a picture of a forest and asked them to describe what they saw. The other children said things like “I can see lots of little squirrels” etc.

“I don’t understand your Cat”, said the teacher. “When I asked her what she could see in the picture, she replied” – “It’s a forest”.

I’ve got a horrible feeling that my mother has decided that this was an example of autistic ‘lack of imagination’ and was looking back with supposed hindsight regarding her daughter’s ‘defects’.

Knowing myself as I do, I was almost certainly being deliberately rude. As a powerless and vulnerable child, trapped in an unpleasant situation, it would have been my small way of fighting back – I’ve never liked being talked down to.

Hearing my mother recall this anecdote has made me realize that everything that I do or say will henceforth be taken in the context of my autism. If I don’t grasp what someone’s says straight away, it will be

‘Oh, that’s because she’s autistic’

When actually, the real reason is that I didn’t hear them or that their explanation was nonsensical.

If I’m upset but I don’t cry – it’s because I’m autistic

If I’m unsympathetic to someone’s plight – it’s because I’m autistic

If I’m not entertained by certain social situations – it’s because I’m autistic

If I don’t agree with you – it’s because I’m autistic

If I don’t laugh at your joke – it’s because I’m autistic

Once people knew, I would be forever wondering if I was being treated differently because of someone else’s pre-conceived ideas about autism.

In short, I would never be able to trust anyone ever again.

The problem is that if you try to demolish these stereotypes by declaring your autism to the world, there are quite a few people who won’t believe that you are autistic BECAUSE you don’t fit the stereotypes.

Some people seem to decide on an opinion first and then try and get the facts to fit. It’s almost like logic has gone out of fashion.

In a recent Twitter exchange, I came across someone on the spectrum who declared that (and I’m paraphrasing here)

“Asperger’s is different to Autism because it’s an identity and is high functioning. People diagnosed with Autism are low functioning”

I decided to confront him on his factual error to start with, rather than the fact that he used functioning labels* in the first place. I always find it more effective to keep it simple and I didn’t want to confuse him by attacking him on multiple fronts at once.

I told him that I had a diagnosis of Autism myself and that I did not consider myself to be ‘low functioning’ (as he so charmingly put it) and therefore his statement was factually inaccurate.

Statement A – All pigs are green

Statement B – I’m a purple pig

Statement B disproves Statement A. It’s a simple exercise in logic.

To me, the only reasonable response to my statement would have been along the lines of

‘I’m sorry, I didn’t realize that. I was wrong’

Unfortunately not, my friends.

This simple example illustrates just how some people let their prejudices overcome logic. It’s almost that their opinions on a subject have been fixed to the extent that they have become a matter of faith, rather than something which will be regularly updated whenever a new piece of evidence is received.

Essentially, what happened is that he refused to accept facts that didn’t fit in with his current set of beliefs.

This is exactly what is happening when the general public are confronted with facts about autism and autistic people that contradict what they already believe and this is why it is so hard to change people’s opinions.

Sometimes, it seems like no matter what autistic activists and their allies try to do – no matter how hard they politely try and explain, point them in the right direction, offer useful links, relate their own experiences, it doesn’t seem to get through.

It’s almost as if some people have a ‘kill switch’ inside their brain which operates when they are in any danger of doing any actual thinking.

I understand that nothing will change if people hide their autism and treat it as something to be ashamed of. The stereotypes surrounding autism will never be broken down if autistic people don’t speak out and force people to confront their prejudices.

I’ve tried to make a difference in my own small way, but it’s an uphill struggle and sometimes, I feel like I’m trying to achieve the impossible.

The decision to tell people that you are autistic is a decision which has to be made by an individual themselves – there’s no right or wrong choice and I certainly won’t be judging anyone. One thing I do know is that there are people who may use it to against you and unfortunately, you will almost certainly be judged because of it.

I currently live in a village and if word got out to the general population that I was autistic, I strongly suspect that there would be no happy ending. If I were to hope for any sudden rush of empathy and understanding, I would almost certainly be disappointed.

I would merely be throwing them a juicy piece of gossip for them to chew on like hungry dogs. I can imagine the curtains twitching when I walked by and people nudging each other when I walked into the shop.

Perhaps at some point, I will be able to be completely open about who and what I am, but when I look at the world around me, that day seems a long way off.

Every so often, I take it out and smile. I hope that one day I’ll be able to wear it.

*The concept of having ‘functioning labels’ such as ‘low functioning’ or ‘high functioning’ is something which is often debated by autistic people, many of whom feel that labels like these are divisive, unnecessary, over-simplistic and offensive. I would never normally use them myself for those reasons, but I will point out that I quoted from his tweet in order to be able to discuss his opinions.

2 Responses

Interesting article. The bit about your mother reframing your past and present behaviour to fit your diagnosis was particularly illuminating. I spend too much time reading first hand experiences of autism as I definitely have it despite being undiagnosed. I would love to get a diagnosis and to tell people although this article is making me have second thoughts. The main reason for keeping it secret however is my job which is secure, well paid but safety critical. Although I suspect some colleagues to also be on the spectrum, it would more than likely result in unemployment if the secret got out; it’s an old fashioned, macho industry. I’m sharing this out of desperation as I’m in a downward spiral of loneliness and low self esteem. It’s becoming increasingly difficult to maintain a facade so that my traits aren’t too obvious. Do you try to pass as neurotypical or are you just you?

I currently pass as neurotypical, but I suspect that there are many people who know that there’s something different about me, but can’t quite put their finger on it. I’ve been pretending to be something I’m not for decades, but I just thought that I was hiding my personality (rather than my autism). It’s not really a conscious decision to ‘pass’, it’s more that I’ve never known anything else. I learnt from an early age that being myself resulted in negative reactions, so I adjusted my behaviour when in the presence of people I didn’t trust (ie nearly all of them).

I understand your desire to get a diagnosis. I strongly believed that I was autistic, but there was always this tiny element of doubt in my mind that I couldn’t live with. I don’t know the situation where you live, but is it possible to get a diagnosis and only share it with close friends/family and keep it a secret from your workplace?

There are many people involved in the online autistic community who don’t have a formal diagnosis, but who identify as self-diagnosed and the vast majority of people are fine with this. After all, there are many reasons why someone might not have a formal diagnosis. Perhaps you will find the acceptance and friendship there that is currently eluding you. I truly hope so and good luck with whatever decision you decide to make 🙂